Waiting for a Date...

We just got home this evening and Ayden is still playing in his room just giggling, talking, and laughing. He went to bed at 8:30 PM and its 11:00 PM, OH WELL! :) Listening to him squeal in delight is just too hard to ignore, but much needed and appreciated. Dr. Wylie sent us home today after reaffirming that she would be presenting her opinion, the VEEG, and MRI to the Epilepsy Management Team. Dr. Wylie believes the current seizures are coming from remaining tissue in the right hemisphere. The recommendation is an anatomical hemispherectomy. They meet once a week so within the next few weeks we should get a call to set up Bub's next surgery. The difference this time, functional vs. anatomical hemispherectomy, is the amount of the brain tissue that will be removed. Although it is more invasive and takes a bit longer for the recovery, we will not be losing ground in his development like we did before. There will not be a need for the inpatient and intensive therapy afterwards and we can just continue his current therapies when we return. Our biggest concern/reservation in regards to the procedure is once again the factor that makes him different from his hemi peers, the HSV. With his first hemispherectomy, the HSV flared up and delayed recovery, but it did respond to the Acyclovir and went dormant again. At that time there were only 2 other cases like his documented so there are still unknowns, we will just pray that the virus will be controlled as the brain heals after surgery.
Why take the risk? Although his seizures are mild now, they are still seizures and could cause falls along with the cognitive damage that cause every time they take a little bit of our Bubba with them. He deserves a chance to be the best Ayden he can be and we have to give him that chance to thrive without the interruptions seizures create and the fog high levels of meds cause. We don't have a date and won't do any planning until then. We don't plan to delay because there is never a "good" time for brain surgery, the sooner the better.  Our hope is to be back to "normal" within a few weeks after the surgery, but we will see. Ayden is and always has been quite a fighter! We truly appreciate the prayers and thoughts from every member of Ayden's village :) We feel incredibly blessed to have our Hemi Family to field our questions and understand our concerns and appreciate the notes, calls, even late night texts from friends and family. Thank You! 
(PS- it is now 11:24 PM and someone is finally sleeping...)

Spring Break in Cleveland

I talked to CC today and we will be admitted on Sunday, March 25th to the epilepsy monitoring unit. I am glad we could get it scheduled over Spring Break because it will save sick days, sub plans, and we will be able to stay as long as needed to record seizure activity.There are just a lot of unknown variables right now so the sooner we get this figured out the better. We are headed to Walton this weekend for my niece's birthday @ the skating rink so that should be fun. If we get Bubba on skates video and pics will follow.
On a bright note, Ayden's Avengers  - our Hemi 5K team is growing. We are planning on running/walking together the weekend of May 12/13th. If you would like to join us go to
http://hemifoundation.intuitwebsites.com/index.html
 Click on the 5K link and sign up as a virtual runner using our team name "Ayden's Avengers"
You can sleep in and get a t-shirt anyways OR join us for the 5K and then a BBQ later that day.

Running!!! :)

Step B...

When we spoke to the nurse at Cleveland a few weeks ago the plan was to stay on track with our local neurologist's plan. The hope was that we would see the seizures disappear. Today, we met with our local neurologist and I showed her the seizure footage from the truck on the way down to the appt. We have very little room left on his current meds and we have seen seizures return on a daily basis a few clusters a day. When I talked to the nurse at CC I asked the inevitable question about 'What we do next if the seizures don't go away?'. The explanation I was given was it is a three step process: A - Try meds, B-Testing/Evaluation, C - Surgery. I absolutely love Dr. Khan as she is so easy to talk to and down to earth. She said there really wasn't any reason to prolong the process and that it was time to go back to Cleveland for testing. She said it is important to remember if he is not a candidate for another surgery we will continue to explore other options. However, if surgery is again an option we really need to consider it. After we left her office I called Cleveland, and spoke with our Neuro's office there.  A nurse called to confirm my message and said she would see what Dr. Lachwani wants to do. So we will wait and hear something next week. We know other Hemi families that have had another surgery after the initial surgery (anatomical after a functional hemispherectomy), so this is not a total surprise. While Ayden's seizures are mild right now, we have to think about what the seizures are doing to him, especially long term.  Dr. Khan was talking about how Ayden is so sedated by the medications today as he was leaning against me and let out a big ole yawn at the perfect moment...Such a ham! No matter what the circumstances Bubba can charm anyone!
So there it is...the answer to "How's Ayden doing?" :) There isn't much we know right now, but we are dedicated to giving Ayden every opportunity to be the best he can be.

SSSHHHut the door!

To start this post we want to tell a little story...Ayden has loved a few naughty words for several months now and one of our biggest fears has been his use of those words at school. A few weeks ago he came home saying "Ssshhut the DOOR!" We really felt the shame and worried about how big the problem must have been for the school since they saw the need to teach him that phrase to curb the use of the word. About two days later, I heard Ayden singing "1,2 Buckle my shoe, 3, 4 Shut the door!" - BIG SIGH of relief :)

In regards to developmental progress, Ayden LOVES to sing. It isn't always clear, but we really enjoy his voice. He has been fortunate enough to participate in Music Therapy since January @ IPFW and really enjoys it. Communication is still limited mostly to one sided expressions, but Ayden will occasionally bring up things that give us hope. For example: "Ayden did you see Miss Tasha today? Did you have a good day @ school?" Normally his response is nothing or a song, but the other day he said "Line Leader". I have no idea if he WAS actually line leader that day, but we celebrated anyways! :) We are very glad to have our outside speech therapists working with him each week at Brooke's house on peer interactions and some behavior modification. He absolutely loves learning and showing what he knows we just need to help him keep his behavior in check and use his stubbornness in a positive manner.
Physically, Ayden walks everywhere, and we can't keep him out of ANYTHING! The cabinets are his favorite place to play and nothing is safe on the counter, he loves the using toaster as he says "Cooking!" Lefty has been working more than ever and our therapists at Parkview are working again with some limited restrictive therapy during OT/PT.
Medically, we are cautiously waiting to see what is next. Ayden started seizing in late January;These seizures are different from any seizure activity we have seen since the surgery. We believe they are originating from the right side of the brain because they are left sided myclonic jerks in clusters, just as we saw prior to surgery. We have been in contact with both of our neurologists and are just playing the medicine game. We have increased Ayden's meds over the past few weeks hoping to see the seizures disappear. When we increase his dose we see some wonderful things happen, the seizures subside, he seems more cognitively alert, sleeps better, even seems happier. Then within a week or two we see seizures again and we are maxed out on his current meds at this point. He has had a cluster each day this week since Thursday sometimes more than one. When Ayden was med free for those months, not so long ago, he was happy and active. The medicines not only put him in a fog, but may not work to prevent the seizures from any remaining tissue on the right side. Another surgery could be in the future if we do not find a combination that works. Surgery is not something we want for Ayden so we will continue to wait and see, a follow-up at Cleveland is probably the next step, but we would rather wait until the seizures are more frequent to avoid a long VEEG. His seizures are mild right now so we are just enjoying the progress he makes, the happy times when he acts likes any other 4 year old boy, teasing his sister and giggling about bodily functional... :)
We are so lucky to have Ayden's caretaker, Brooke, who continues to bear with us as we go through ups and downs with his mood/meds/etc. She was the first to see the seizures reappear and has done a great job tracking them for us. The school has also been helping to document anything and everything and that has really helped. Without Grandma and Poppa to run Bub to therapies each Monday he would not be making the gains that he has so we are indebted to so many people. Every member of Ayden's "Village" it is a blessing. Thanks to all who help by praying, listening, and offering support.